Tamoxifen - doubts???

Hi Jessica

As my post says I am researching to make sure I make a well informed decision about my future.

I will not make any decision like this lightly and after speaking with a breast care nurse yesterday - she informed me there is no hurry to make this decision - just because the oncologist told me to take them next month she has said I can take my time - this has made me feel heaps better and taken away the pressure.  

It is very unfortunate that you know someone who has had a recurrence  but as you also mentioned this can occur when the 5 years is up or even whilst taking the medication as I have since discovered - there are no guarantees out there unfortunately.

Take care 

Lynn

Yes your treatment for cancer is your own choice. We are all free to choose a high risk of dying soon against the best advice, they will not force us to take their anti-cancer treatments.  You are free to delay Tamoxifen against your oncologists recommendation, you are free  not to take it at all.

But please first ask your oncologist what difference it will make to your risk of the cancer coming back.You may basically be choosing a very high choice of an early death if you make this choice. And for our friend, it is one she deeply regrets now she has little time left to live because of that choice.. She is so upset  that she let those distressingmenopausal symptoms etc matter more then  than continued life now

If your cancer is/was Estrogen positive, Tamoxifen modifies your body so it is no longer a nourishing environment for the "seed" cancer cells you almost certainly have in your blood post surgery and for years later,. These have the potential to grow into recurrent or metastatic cancer. Metastatic breast cancer is fatal for over 80% of patients who get it, lower for HER2+cancers that have not previously received herceptin, but still too high for comfort.

Please do not kid yourself that your surgery and radiotherapy and the fact you have no evidence of disease means that you are totally free from cancer cells that may yet grow into new cancers, as happened to our friend.

The higher the % Estrogen-positive your tumor cells are, the more likely the cancer stem cells are to regrow into a new metastatic cancer over the next 10 years. My cancer is under 2% Estrogen positive, so Estrogen is not a fuel for my cancer. Instead mine is strongly HER2+, -ER-,PgR-,so herceptin blocks off the HER2recieptors so the growth hormone cannot get in to my cancer cells and boost their growth. If like me you have a very low ER+ percetage, there is nothing to be gained by taking this drug and risking the side effects. But if it is higher (and yr surgeon/oncologist will tell you what figure means Tamoxifen will help you)  it could be the difference between long life and an early death for you,

HER2+ cancers grow very fast, and the seed cells almost always"germinate" into recurrent/metastatic cancers within 5yrs if they are going to.

But studies of who gets the cancer back when is showing  that ER+ seed cells are viable for much longer than the just HER2+ ones, so if you stop taking Tamoxifen after 5yrs, you still have too high a chance there will be some that will sprout and grow at that point

I hope you make well-informed choices that work for you and give you both a long healthy life and a life free from distressing symptoms. I also hope that if you have to choose between these two, you will make sure you really know the risks you are taking, and that you won't later regret the choice you make now.

Hi Lynn

I was doubt about this small pill when about to start in last Sep.  I kept asking Onco, Surgeon, and my GP.  The benefit to take this compare with the recurrance ratio that was they kept giving me and reinforce me to the trust of the pill.  I finally started it.

I had some certain side effect, the most annoying for me was the swinging mood, after that were hot flush, bad sleep and bone pain (still manageable).  The low mood caused me think negative, so when it hits me, I have to tell myself I am sick, that's not true, it wasn't that bad......

I also tried different brand, and intake in different time of the day to see if any changes and improvement.  I hope I could get along with this pill when my body adapt into it.  I know I had my choice to take or not to take (even though they medical team propose this range of treatment to me)

It's quite struggling, right?  I doubt simply because the length of duration to the pills daily for 5 years for me.  Be honest, I am now with it and still don't like it.  

Take care.

Rosanna

Hi Lynn

Thanks for asking the question here, as it's given me some good information too. I am glad to hear the other ladies experience of tamoxifen which needs to be considered against many other's comments on how awful it can be!  We are all individuals and need to make the best decisions we can when faced with breast cancer and getting on with a healthy and happy future.

My Dr said I didn't need to start taking it immediately, and a month or two won't matter. That says enough for me, it's a choice and I'm taking my time and frankly are also waiting for summer to be over if I'm going to get hot flushes while wearing a surgical bra and enough clothes to hide it...no thanks, it was 41 degrees here yesterday! Haha, but seriously I will give it a go too when I am physically stronger. Next stop is first "fill" into expanders with the plastic surgeon. One thing at a time for this BC newby.

All the very best to everyone and thanks for sharing

Ali xx

I am hearing you Ali- I felt at the beginning get the treatment out of the way and the rest would be easy but it feels like its getting more annd more overwhelming by the day - I just want to do what is best for my body.  I have 3 children and therefore my main concern is to be around for a long time but quality of life is also very very important.

I started off happy to let the doctors tell me what was best for me but I cant help but question this - you are right why should we not question what we are being recommended to put in our bodies.

Take care of yourself and all the best in the choices you make for yourself <3

Lynn x

Wow Lynn, how lucky are you!   Good luck and continued good health.  Suexx

I felt exactly the same as you before I started taking tamoxifen in Jan 2013. I was terrified that I would gain weight, develop terrible insomnia and become moody and depressed. My oncologist actually told me that most of her patients on tamoxifen gained about 5kg.

But I can honestly say none of these things has happened. I do think my hair may be affected by tamoxifen - it is less thick and lustrous than it used to be (thought it was a hangover from chemo but I read on here that tamoxifen can affect your hair) Also, I recently had a pelvic ultrasound which found the lining of my uterous has thickened. This is very common apparently. I am off to see a gynocologist about it soon. But otherwise I haven't had any side effects.

Like Deanne I put quite a lot of effort into eating a healthy diet and exercisiing regularly. I think being as healthy as possible helps your body tolerate medications better. I too see a healthy lifestyle as offering additional protection against a BC recurrance. I wouldn't now want to stop my tamoxifen as I feel it makes a significant reduction to my risk (11 % in my case). It makes me feel protected.

I would say give the tamoxifen a try at least. Some people do experience unpleasant side effects but you could be one of the lucky ones who does not. It is a very effective drug with a proven history of reducing breast cancer risk. Good luck, Janet.

I have my prescription for Tamoxifen sitting at home unfilled too...I have been thinking about this for a month since my BC surgeon gave me the good news that my bi-lat skin & nipple sparing mastectomy with no cancer in my sentinel node. She said I had two areas of cancer but both were small low grade stage 1 and I am both oestrogen & progesterone positive so I she was prescribing Tamoxifen. I asked why, if all the cancer was removed and practically all of the breast tissue with the back of my nipples being scraped off...what were my chances? She was surprised I was questioning her. But why not question it. She had to check with my rhuematologist if my risk of blood clotting would prevent me from taking this drug. Reading about all the other side effects and risks surely makes me question it. I'm not refusing it, but just taking my time, and I am considering starting it after I fully recover from my surgery, but I am not rushing to add more drugs to my life and think making healthy lifestyle changes are good enough for me today. There's a lot to absorb when you are on this learning curve.

take care, luv Ali x

Take care,